When hope is an illusion

A young male (“Kevin”), barely out of high school, was admitted to the hospital with fever and altered level of consciousness. Kevin had a history of a kidney transplant and was on chronic immunosuppression. Initially just drowsy, three days into his hospital admission he became completely unresponsive and required transfer to the intensive care unit. An MRI of Kevin’s brain showed multiple areas of swelling and the cerebrospinal fluid results came back positive for West Nile Virus, confirming encephalitis. Kevin’s immunosuppression had caused the virus to run rampant through his body and wreak havoc in his brain. There is no treatment for West Nile Virus encephalitis and Kevin’s parents were forced to do the hardest thing in medicine: wait. In neurology, the hardest consultation we perform is that regarding prognostication. A patient has a devastating brain injury, and we are called to determine if the patient will end up with a meaningful quality of life. The obvious challenge of prognostication is the medical and scientific one. How can we communicate to a family if a patient will recover if we do not even truly understand the function of the organ that is the very source of consciousness and our sense of self? There are too many unknowns regarding neuroplasticity and the brain’s capacity to repair itself.Six months after Kevin was admitted, neurology was called to provide prognostication for him. He now had a tracheostomy because he was unable to wean from the ventilator and his family wanted to know what his long-term outcome would be. Over the last six months, Kevin’s neurological exam had made no significant improvement and now, he did not have any significant interaction with his environment. Multiple electroencephalograms (EEGs) showed that he was no longer having seizures—this was just him. His most recent MRI demonstrated that the areas of previous swelling, including areas that controlled breathing and consciousness, had been replaced with necrosis. The brain had gone through a prolonged war and all that remained was destruction and scorched earth. There was nothing to reverse here. The medical difficulty of neuroprognostication can often be addressed through data we have regarding the neurological exam and ancillary tests. If a patient is not responsive three days after an anoxic brain injury, there is a high likelihood of poor prognosis. If the patient has an MRI and EEG demonstrate severe injury, we can tell the family that the evidence we have suggests that the likelihood of recovery is very low. We cannot say with complete certainty, but we do have significant evidence to support our claim.My staff (“Dr. Jones”) and I walk into Kevin’s room. There’s a young man sitting in a wheelchair with a tube connected to his neck. His eyes are forcefully deviated upward, not able to move. His limbs are motionless and his face is expressionless. Next to him is a woman, most likely in her 40s, sitting in a chair reading a novel. She is Kevin’s mother. As soon as we walk in and introduce ourselves, she stands up and welcomes us. She frequently looks down and crosses her arms over her torso, as if protecting herself from what’s coming. There is a more problematic, philosophical barrier for neurological prognostication. What exactly is a meaningful quality of life? What if the patient will be completely dependent or never be able to do any of their hobbies again? Of course, a physician cannot independently decide what is meaningful to the patient. The patient cannot communicate their wishes, and the family is faced with the daunting task of trying to guess what they would have wanted. Therein lies the challenge in providing an answer in the prognostication consult.As a second-year resident I do not know where I would begin to tell a mother her son will never be the same. I am grateful that today, I do not have to lead this conversation. Dr. Jones knows Kevin cannot make eye contact with him, but he still looks him in the eye. He knows Kevin cannot move, but he still shakes his hand. He knows Kevin cannot speak, but he still asks him how he is. Dr. Jones notices that Kevin is wearing an Arsenal jersey, and smiles and asks him if that’s his favourite team. Kevin’s mother smiles back and tells Dr. Jones that it is and Dr. Jones tells her that he also has a son who loves playing soccer but his favourite team is Liverpool. As the tone changes, Dr. Jones speaks softly, with humility, but also with confidence. He asks Kevin’s mother if she would like to sit down but she prefers to stand. He empathizes with her as a fellow parent and tells her that he wishes he did not have to be here, under these circumstances. He has reviewed Kevin’s case in detail and acknowledges that brain injury is complicated. We can never truly predict what a patient’s outcome will be. Kevin could make some recovery but given the extent of brain damage and lack of neurological improvement, he would likely always be functionally dependant. Kevin’s mother listens. She is not surprised but hearing this from a neurologist is different entirely. She takes the blow and does not shed a tear but takes out a crumpled piece of paper from her pocket. With tremulous hands, she asks questions: “Is stem cell transplant an option? What about using a stimulant medication? What about a specialized neurological centre?” She has had months to think of these questions and finally has a chance to ask them.During prognostication, we tell a person that the family member that they have known and loved will never be the same. We tell them that, even if the patient survives, their emotions, identity and sense of self could be completely lost. Maybe the neurological prognostication consult is not about providing an answer to a family but about listening and understanding the patient, taking the time to get a sense of who they were, what they enjoyed, and what they valued. Maybe the family knows that the patient will have a poor outcome and they want to do what is best for them. Maybe they just need someone to finally take away the hope they are holding on to, so they can finally make the hardest decision that they have ever faced. Dr. Jones takes the time to patiently listen to Kevin’s mother’s questions. She is extending her arm toward branches of hope—anything that could provide even the smallest benefit to her Kevin would make all the difference to her. Dr. Jones has a difficult task. He wants her to feel heard but does not want to give her an illusion of hope, one that is purely fleeting and ephemeral. He acknowledges that her questions are well thought out and important strategies to consider but ultimately tells her that there is no evidence supporting them. They are unlikely to make a significant difference to Kevin’s outcome. Kevin’s mother nods her head but does not say much—she thanks Dr. Jones and finally sits down. Dr. Jones thanks her for her time and leaves the room, closing the door, but leaving the door for future discussions wide open.Dr. Zohaib Siddiqi recently completed his neurology residency at the University of Manitoba. He is currently completing a fellowship in Vascular Neurology at the University of Cincinnati.

When hope is an illusion

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